Tired

It has been ages since my last post but just a few quick comments about the "work in progress" that we are or this thing we call life...

We are OK. Not super-dooper, over the moon type stuff but we cope and get through each day. We love Anika but having her does not "make up for" losing Josh and never will. They are separate people and one child does not replace another; no matter what happens we will always love and miss Joshy no matter how many children come after him. We function each day and as a rule are quite well balanced and yes even happy (although we are not happy about everything in our lives just like everyone else).

We do not know if we'll have more children or when. Certainly not in the near future. End of story and that is all there is to it.

Anika is beautiful and happy but absolutely traumatised by the loss of her brother. She saw things that no child should have to see, the pain and suffering of her darling Josh is something we wish she had not had to go through but did not feel it was right to keep her from him and the healing of knowing he never stopped loving her and the fear of the unknown taking up space in her heart. Of course she remembers him and what went on, it was a massive part of her life and she too lived with the worry and uncertainty of what the future would bring. Her healing too is an ongoing process and she cannot be expected to be a perfect child and have impeccable behaviour at all times. She just cannot express as effectively how she is feeling or have the learnt behaviour management we as adults have learnt. As her family and friends we have to give her the love and understanding we give ourselves in letting the hurt and healing cycle when we lose a very vital person in our lives.

Josh remains such a vibrant and constant part of my life that he is embedded in my soul. I don't always have to talk about my grief to be hurting and healing so never be fooled that I am "over" his illness in particular and to a lesser degree his death. Josh's physical absence is a huge thing but the legacy of his illness is the most distressing component for me. That he was in pain (even if he didn't often say so) and that his new normal was tubes, injections and the invasion of his being that is the medical side of treatment is my nightmare. Somethings we cannot change and it is my cross to bear that I could not take all of the pain and distress away. ANY pain was too much and ANY emotional injury is too great for my beautiful boy to have gone through, that is how I feel. Even though Josh is physically gone, his soul remains to allow us to move forward with courage, his key legacy.

We understand our worlds through language, and I have learnt to chooser words daily to explain my position and feelings, I've found that in three words summarising how you feel can help you move forward and modify your position. My three words to summarise Josh today are: courage, love and forgiveness. The three words I assign to my life at this point are; gratitude, hope and passion. Each of these words are positives I choose to define my life by and I hope each day to move forward with gratitude for what I have and the experiences I have had and people I have in my life, hope that there will eventually be a cure and passion for my family, the gifts I have been given and the information I can now share.

Hannah